View Single Post
Old 11-04-2006, 01:23 AM
LizaJane's Avatar
LizaJane LizaJane is offline
Member
 
Join Date: Aug 2006
Location: Brooklyn, NY
Posts: 805
15 yr Member
LizaJane LizaJane is offline
Member
LizaJane's Avatar
 
Join Date: Aug 2006
Location: Brooklyn, NY
Posts: 805
15 yr Member
Default

I can't imagine why your docs start you at high doses when they must know you are nervous about meds. But you can always break them apart and try them out themselves.

Cymbalta is almost identical to Effexor, just newer. I don't think there's reason to fight the insurance company on this one, just yet. You could try the effexor. If you do'nt like it, then your doc can get cymbalta approved on the basis of the cheaper drug, effexor, failing. They both work, are essentially the same, and have no new magic. They are a combinaton of an SSRI component and a stimulant. You could just as easily be taking an SSRI such as prozac and a stimulant like Ritalin. With that approach, your doctor can actually adjust each piece to tailor-make the med for you. Effexor and Cymbalta are like fixed combinations of the two. The problem with both is that when people get off them they have weird sensations that are, well, uncomfrortalbe weird. Like shocking sensations in their head, or feeling like they feel their brain. Just weirdnesses. Because of this there's a good argument to use NEITHER of these, but to use the older and cheaper drugs Prozac/Zoloft/Celexa/Lexapro which can be stopped with no withdrawal, and combine with a stimulant: Ritalin, Adderal, Wellbutrin, which also have no withdrawal.

The tricyclics: Amitryptline, Nortriptiline, etc, are also great and can help with deepening sleep. And cheap. Have they been tried? Used with anything with an SSRI component, the dose needed of these is much less. I take 20 - 40 mg of Amitryptiline and find it really helps me get a goood night's sleep.

Except tonight---here I am at 1 am, energized because I've been on steroids today, and they always make me extra energetic.

Topamax makes a lot of people feel their thinking is slowed, and I believe it has a black box warning, so there's not so much going for it before using the others.

Lyrica is the new improved Neurontin, from my understanding. (Having not been at the point of considering this, I haven't been reading about it as much). My understanding is that it causes less fatigue than Neurontin. Again, if the insurance company balks, they'd like to see that Neurontin was tried, or that it can't be tried because you can't be given anything more sedating.

Last, something that hasn't been talked about much...Provigil is a drug approved for narcolepsy--it increases wakefulness. It's a mild stimulant of a totally different sort than ritalin/adderal/ etc. It's useful for the sedation produced by all the other drugs, but also, because it's a stimulant, there's real reason to believe it may help pain also.

I take Provigil when I've had a really bad night's sleep, or when I take oxycodone during the day. And I find I function so incredibly well on those days that it seems it is working in many ways at once--making me more alert, sure, but also making me feel, well, more comfortable in general. I haven't thought much before about the question - is it actually working as a drug inhibitor, but my guess is it is, and that's an easily tolerating, smooth med. My insurance company approved after my doctor said my pain meds were sedating me.

Finally, and I know I'm all over the place here, GJ, but there are tests that doctors can do to show that some people are sensitive to drugs. There's an system in the liver which de-activates most of our drugs called the P450 system. Some people turn out to have a lot of the P450 enzymes, and drugs just run through them leaving no effect. These people sometimes need 10 times the dose typical people need to just get an effect. Doctors worry that they are abusing. And there are the reverse, people with so little of the enzyme that a fraction of a pill can send them looping off.

So now there's a blood test to do for the enzyme, and all labs do it, and insurance pays. I think it's great to have done if you think you need different doses of drugs than most people, becuase it's one of those pieces of paper that says to the doctor==this patient isn't making it up; they really do handle drugs different. This article talks about these tests. I do think they can be very important in helping doctors to understand us as individuals, beyond our words.

http://www.labtestsonline.org/news/cyp050316.html

Phobias: As phobias go, I think you've got a rather helpful one. It is much much better to be scared of new drugs than to be a risk-taker here. I think it's a good idea to not take a drug which hasn't been used for years. I don't see any reason to be the first one on the block to use it. Too often we find out later what can wrong. So, not to be hard on yourself--this is good self-preservation. Follow your instincts, and use only what seems necessary, and tried and true. Going slow is good. Look, I mean, we have CHRONIC pain. It's not an emergency, and we can afford to be careful it getting good pain relief. There are always drugs to use for immediate relief, rescue drugs or BT drugs I've read them called here.

I have a doctor who has been trying to get me to take Methotrexate for, oh, I'd say 6 or 7 years now. I went for a second opinion, and he agreed. I'm still not comfortable with the idea. I feel funny going back to him, when he knows I'm not likely to follow his advice, but I figure I'd like to keep him on board, as backup, because maybe someday I'll agree and make his day! But I'm not comfortable with his recommendation; it just scares me too much. And he has to live with that. I frustrate the hell out of him, but every 6 months, I still come for a visit, because I know he cares and thinks he can help.

Oh, GJ, your doctor is breaking one rule of good medicine. Perhaps he feels desperate to help you. But a really good rule is to never, ever change more than one drug at a time. Afterall, if you start 4 drugs and get a side effect, how the heck do you know what caused it.

So perhaps you could enter a contract with him. He agrees to go one drug at a time, and you agree to comply, as long as he raises the dose slowly. During the changeover to just one new drug, you promise not to blame him or hold him responsible for your slow improvement. So you have a deal: you wo'nt act desperate or hold him responsible for slow results, and he won't push more than one drug at a time. Also, the P450 testing, to get a sense of do you metabolize drugs slowly.

I've made a deal with my doc: I keep coming back every 6 months, he keeps advising, and I will follow all advice EXCEPT the advice to go on Methotrexate until I feel more desperate. Within those confines, I will not hold him resposnible for the fact that I still have pain. And I tell him I respect his advice and need to keep hearing it to keep myself reminded of this option.

At some point, I know I'll agree to a 3 month trial, but no more. But I'm still not ready yet.

Also, like you, I have a pain person (my neuro) and a rheumatolgoist. The rheumie is the one pushing the methotrexate the the disease modifying antiarthritics. I get it that he cares about the underlying disease, and is really afriad that all the good pain treatment in the world won't help, unless he can stop the underlying the inflammation. I just haven't bought in.

Topamax I'd never buy into. I want to be more mentally alert, and it's got the least literature pain relief.

Gee I hope this helps; it's 1:20 am, and I'm just still up and way to energized for my needs. Tomrorow I'm doing my first drive in over a year, a two hour drive, and that's why the steroids. They do relieve a lot of the pain,without sedating me (clearly! I could do spring and winter cleaning at once like this).
My neuro lets me take them occasionally, and they do help, but can't be used ongoing. but still, here i'mtryin to sign off and say goodnight and I AM STILL BABBLING!

Hope you find something of use buried in the babel.

Good luck.

Oh, PS and all: A good relationship with your doc is the core. If you can't make that work, all the rest is moot. worth thinking about-Do you like your doctor?
__________________
LizaJane


.


--- LYME neuropathy diagnosed in 2009; considered "idiopathic" neuropathy 1996 - 2009
---s/p laminectomy and fusion L3/4/5 Feb 2006 for a synovial spinal cyst
LizaJane is offline   Reply With QuoteReply With Quote